OCD, my big, shameful blow up, and other ways grief affects my daughter with autism.

By Jennifer Dyer

t easy

I’ve always wanted to be honest here. Sometimes I still hold back, fearing what will happen if I let others see my raw emotions over the struggles of raising a child with special needs. I suppose that’s why I haven’t blogged much in the last year–too many painful moments I didn’t have the strength to share. Happy moments, too, but so little time to write. But as I reflected over this past week, I’ve decided I’m probably not alone in my desperate thoughts or my moments of deep frustration. So, I decided to share. I hope you know you are not alone. I hope I’m not alone, either. Autism isn’t easy, but neither are so many of the other challenges we all face.

In early March, Rachel started talking about field trips. It began with her signing “Brown” and “Bus,” meaning she wanted to take a brown-bag lunch on the bus, which is what happens as part of all her school field trips. She also signed, “Duck” because on one field trip to Mayfest we saw a person in a giant duck suit.

s bus2

Great. Mayfest wouldn’t happen for more than a month, the duck might not be there, and the school probably wouldn’t go there again.

But, being the language-development-minded mama I am, I found the sign for field trip and taught it to her. Then she asked for “brown,” “bus,” “duck,” “field trip.” Pretty amazing.

Or so I thought.

About ten thousand brown-bus-duck-field trips later, I thought: What. Have. I. Done?

Then she started adding “seal” (clapping) and “fish” because someone told her the next field trip would be to an aquarium.

Friday, when we got home from her horse therapy, she cornered me in the kitchen. “Seal, fish, brown, bus, field trip.” I tried to tell her “later,” but she thought I wasn’t understanding she wanted to go the aquarium on a school bus That Minute, so she clapped louder. In my face.

She repeated the signs and clapping every few seconds, maybe ten times a minute. I’m not in MENSA, but that’s about 600 times an hour. I tried acknowledging. I nodded. I told her “later.” I talked about the aquarium. I talked about her horse. I talked about food. I tried to get her to jump on the trampoline. She communicated louder. In her case, that meant screaming, hitting her head, and more clapping in my face.

The shut-ups started deep in my chest. ShutupShutupShutupShutUP! Before I knew it, the shutups and other things leaked out my mouth. My words started quiet, but increased in volume. “I can’t tell you! I can’t control it! I can’t get a bus here or plan a field trip! I can’t talk about this anymore!”

Why did I ever wish she could talk?

Even as I thought that, an ocean wave of shame plowed over me. How could I be so calloused? Yes, I’m desperate for her to talk. Desperate to help her strive toward an independent life. I long for her to communicate, but not like this. Not the same thing over and over and over and over. It’s not communicating. It’s obsessing.

She clapped more, screamed, cried, kicked. I finally escaped to my water closet. I sat on the toilet and stared at the hole knocked into the wall by Rachel during numerous tantrums, many of them over wanting a stupid field trip.

For a moment, I envied my husband’s aunt, dying from cancer as I wrote this.

A wave of shame tsunamied over me. A hurricane of guilt followed. No, no, no, no, no. I didn’t mean that. I’ve already faced possible death from my own battle of cancer. I didn’t want to die. I just wanted to live to be a mom, I begged God to give me more time to be a mom.

But I couldn’t help thinking…I didn’t know, I didn’t know, I didn’t know how hard, hard, hard being a mom would be.

Even as I drowned in shame, I still envied our aunt, about to enter Heaven where communication disorders shouldn’t exist. Where pain and impatience shouldn’t exist. Where field trips, if they do take place, won’t be the subject of E.V.E.R.Y. conversation. Nor would I have to wonder “What Would Jesus Do” because I would be able to Watch What Jesus Does and thank Him for doing it instead of me.

What kind of person was I to think such horrible thoughts?

Probably a normal one who hadn’t slept well in a decade with a child screaming in the next room about a field trip.

I leaned over my knees. I wanted to escape. I wanted things to change. I wanted to see a day where Rachel wasn’t severely disabled. I. Hate. This.

My thoughts swirled around. “It’s not fair, God! I see so many families on Facebook. At the park, at schools, at the beach. People on vacations with their happy, shiny lives.”

I know it’s not all carnival games for them, either, and I know I don’t really mean it, but sometimes I find myself wishing I could have THEIR issues instead of mine.

Rachel still screamed, so I jumped into the shower and hid under the spray, my anger swishing and washing down the drain. Finally strong enough, I exited the shower and tried again.

And. She Kept. Going. Screaming and crying. Kicking and stomping. I knew that night would bring another middle-of-the-night bout of screaming and crying and kicking. She’d ask about a field trip, over and over. More holes, more damage, more moments of madness.

I called my sister. “I can’t live like this! I can’t do this for another forty or fifty years. It’s not fair, not fair, not fair. I can’t help her!”

In that moment, as I sobbed on the phone, I realized THIS wasn’t about this.

This screaming from Rachel wasn’t about a field trip. My screaming at Rachel wasn’t about field trips.

This was grief.

Earlier that day, we had stopped by my mother-in-law’s house to say hello and check on our aunt. I didn’t intend for Rachel to see her–the door was closed–but Rachel sensed her presence anyway and ran into her room. She stood in the doorway, signing “I love you,” but our aunt didn’t wake, was too weak. Rachel signed “Up” because she wanted her aunt to get out of bed, to talk to her like normal, but she couldn’t. I told Rachel she was just tired and that she loved Rachel, too, but I knew she wasn’t able to wake because she was so close to the end of her life.

A sharp arrowhead seemed to be stuck in my throat. I couldn’t swallow past it. For years, our aunt had reached out to Rachel, had worked hard to engage her. Rachel wouldn’t always respond, yet here she was initiating a conversation.

And her aunt didn’t get to see it.

It. Killed. Me.

And so, in my dark moment on the phone with my sister, I realized Rachel’s obsessive behavior was about anxiety, about my grief and the strange way I’d been acting, about the way her aunt didn’t talk to her, about the world not making sense.

Sometimes I forget how much Rachel sees and feels, even if she doesn’t exactly understand it all. And it’s amazing how much my stress level affects her anxiety. As her anxiety goes up, her repetitive behaviors and obsessive thoughts increase. It’s all linked, only I forget that I have to be the one who stays on top of that.

As those thoughts lined up like cars on a train, I thought about my personal struggle with death, I remembered the love I’d felt for my children in that moment. I grasped it with the tips of my fingers, a jagged little piece of hope.

I pulled it close. Yes, I could do this one more moment. One moment at a time. It’s difficult, impossible. I clung to my faith that gives me hope that someday things will be different, even if it’s not while I live on this earth. I clung to my faith that tells me God will give me what I need in the moment I need it. And I clung to my faith because sometimes it’s the only thing keeping me sane.

The next day we made some changes. We borrowed my mother-in-law’s recumbent bike as another way to help Rachel exercise more. The more exercise she gets, we hope the less anxiety she will experience. We took Rachel for a brown-bag-lunch picnic at the park, and in answer to my prayers, our aunt woke up and was able to see Rachel tell her “I love you” only one day before she died. And I’ve worked on my own emotional state. Like the Dog Whisperer says, a calm, assertive state of mind in the family leader creates relaxation and a sense of calm in the rest of the pack.


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Mockingjay cake!

mockingjay cake

My daughter is a big fan of The Hunger Games series, so she decided she wanted to watch the newest movie for her birthday party. So, I needed to make another Hunger/Games-themed cake.

Cake from last year:

I used a toothpick, a table knife and some edible modeling dough to form the bird. To make the ring that sits under the bird, I rolled out the dough like a snake, put it on the flat rim if a glass bowl and smashed it down. I know, we’re super high tech here. To get the brassy color, I sprayed the bird and ring with black edible spray paint then layered that with gold edible spray paint. It took a few layers to get it right. Then I brushed yellow gel over the top to make it shiny.


For the fondant, I roll it over the cake then steam it with my iron to make it shiny…the only time I seem to use the iron, BTW.


Rach loves helping me. To her, it’s like playing with Playdoh.


To get the fire, I used a combination of red, orange and yellow sparkle gel frosting and brushed it into peaks with a paint brush.

I also chose to cover the board edges with the black fondant. I thought it looked better than the silver board.


And I tried not to cry when we cut it up and ate it.  Ha! It turned out super cute. The girls loved it and said I was cool. You can’t get a better compliment than that from a bunch of 13 year olds!

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Special needs prom prep.

The special needs prom is around the corner, so Rachel and I are having fun getting ready. The theme this year is Superheroes! Right up my alley!

We’ve been cutting out sparkly paper, cutting out fondant and baking cupcakes! Love it! I may never get all the glitter cleaned up, so it’s a good thing I like it. 

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Pants up. AKA Mommy loses her cool.

by Jennifer Dyer

It might sound like this will be about fashion. Not really. Yes, wearing saggy pants leads to perilous moments of ankle waddling, but this is about my daughter with autism and her sensory issues.

Rachel likes to pull her pants down. I don’t know why. I suspect the pressure of a waistband on her tummy while sitting is painful. If any kid has gut issues, it’s my sweet girl. We have most of her tummy troubles under control with diet, but I imagine she still has discomfort.

So…the pants. We buy the softest, most stretchy leggings possible. I buy her long dresses to wear over those. But if it were up to her, she’d skip the leggings.

In the car, on the bus, wherever she goes, Rachel likes to sit on her bare bottom. She pulls down everything under her dress and sits on the seat commando style. I don’t know why. I never pretended to understand her sensory issues. But I know that’s at least a part of where this stems from.

I understand it’s difficult for her. But I also understand that in society, pants are not optional. Maybe in some places…but not in most. School, grocery stores, libraries–pretty much pants-required kinds of places, or at least they are pretty adamant about covering of your hindquarters. The pulling down her leggings to sit has become a big issue at school, especially. It’s keeping her from going to general ed classes and mixing with the other kids. It’s affecting so many areas of her life.

While riding in the backseat with Rach, I asked her to pull her pants up. She did about halfway. A second later she yanked them down. We rinsed and repeated, so to speak, each time with her pulling her pants back down a second later. I know this is beyond a sensory issue–it’s compulsion taking over at this point, but she has to learn. I reached around to keep her pants up behind her back. “You have to keep them up.”

She screamed and said no.

I took a deep breath. I hate confrontation. I hate hearing her cry. I don’t want to make her miserable, and I have compassion for anyone with sensory issues. I had them myself. But she seriously has to keep her pants up! I’m her mother. It’s not my job to keep her happy. It’s my job to develop her character. I have to be strong. All of that ran through my mind as we struggled.

I was doing pretty well to keep my cool, but Rachel grabbed my hand and squeezed the kung and the fu out of one of my bent fingers. I jerked away, but she has a death grip. My brain quit working, adrenaline pounded through my limbs. “Get away!” was the big message in my mind. I smacked her thigh and yelled, “Stop!”

Eldest, sitting in the front seat beside Grandma, whirled around to see what happened. Grandma veered and glanced in the rear-view mirror.

I don’t hit. I occasionally spank, but it’s rare these days because it escalates Rachel’s behavior rather than helps it. When Eldest was little, there was usually a verbal warning of “I will spank you.” And then it was done in a calm manner.

There was no warning here. I didn’t hit hard, but shame washed over me because it felt like I’d acted rashly. I felt liked I’d done something terrible even though in retrospect it wasn’t as bad as I’d imagined it. In fact, it was an immediate response that communicated to her she needed to stop. And I truly didn’t hit her hard enough to even make her thigh red.

Regardless, in that moment, I wanted to curl up and hide because I’d let myself lose control of my emotions. I looked out the window and noticed a meadow full of pink wild flowers. A powerful urge washed over me to jump out of the car and run screaming through the grass and melt into shadows.

But motherhood isn’t about running away. It’s about standing firm, putting my own feelings aside and doing what’s best for my family. Yet I’m not a robot. I have feelings, I feel pain, too, and I get over stressed.

I took a deep breath and apologized to Rachel for losing my temper. I don’t know if she understood me or not, but I told her I should have pulled away. It’s not OK to hit people in anger or in fear. But it’s not OK to hurt people, either, and there are consequences for that.

In retrospect, we shouldn’t have started that battle of the pants on that day because I was too tired to begin with and didn’t feel well. Those big battles have to be started when I’m up to following it through for the long haul. We’re going to try again with her behavior therapist and work our way toward changing her behavior patterns that way.

Furthermore, I need to stop being so hard on myself. I know y’all understand. We have these ideals we hold ourselves to, but fall short. Or people who don’t understand our circumstances criticize and wound our hearts. Sometimes, though, the failure is much greater in our minds. Sometimes we have to offer ourselves grace and move forward.

Grace, it’s often the greatest, but most difficult, gift we can give ourselves.

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First day of summer…Mom’s gonna blow.

by Jennifer Dyer

It’s the first day of summer break*. I thought I was doing pretty well this year. Normally, I have panic attacks in the weeks leading up to summer vacation, but I had none of the gripping, choking, I-might-be-having-a-heart-attack moments this year. I did, however, get shorter in temper and I noticed my energy level draining away. Sure signs of circumstantial depression.

But I was going to prevail. My big plan, especially to start off, was to spend the summer in the pool. Do some projects around the house. Read with Rachel and work on some educational goals.

Today, Monday, it rained and poured. Definitely not a pool day. Rachel kept asking for her back pack and the bus. She tried to pack a lunch. She’s bored, but doesn’t want me to do anything with her because it’s not part of the routine. We can’t read because we’re not at school. We can’t write because it’s not her desk at school. I have stuff to do around the house, but those projects won’t help Rachel’s anxiety with her changed routine. And at this point, my anxiety response is taking over, which means I can barely stay awake and I want to sit around stuffing my face with chocolate.

So, we went to the library. Apparently, so did half our town. The noise drowned out some of Rachel’s squeals. At least we weren’t getting the stink eye from the librarians for disturbing the peace (and really, the librarians here and in our last hometown have always been truly kind and accepting toward Rachel. I just worry we are being too loud).

Every book Eldest picked out felt too old for her, and Rachel just wanted to play inside the wooden tree that was filled with toddlers. As Rachel did her usual hooting and spinning movements, people stared. Eldest grouched and stayed away from us. I wanted to collapse into a pile. This was less fun than our last trip to the dentist.

My mind spun. Rachel’s almost 5 feet tall and she looks like a preteen, but she’s mentally way younger than that. If only she were smaller, she would look more appropriate. We would be a part of the crowd instead of having flashing lights overhead saying, “Something different is happening here! Everyone, stare at us!” If only… But I’m only kidding myself. We don’t blend.

Still, I held it together. We even made it through the grocery store with no meltdowns, Mom included. But when we got home and I tried to read to Rachel. I sat in the wrong place, she didn’t know the book, reading is for school and bedtime, and she really just wanted lemonade. She fussed and even screamed while I read. And she asked for lemonade. And she asked for lemonade. Did I say that twice? Yes, but Rachel said it more than that. (And, of course, most of this was detective work on my part because we’re still so far from her being able to speak her mind except for with a few sounds, signs and pictures.)

I finished that stupid book because I was going to finish SOMETHING, but I should be the one who checks it off on my reading chart because I’m the only one who paid attention. I feel like hiding under the bed. The day is only half over.

But…being a mom isn’t about being a wimp, is it? So many times I want to give up, and there are times I do in other areas. But those projects aren’t people.

As I sit here and write and Rachel yells at me for lemonade, I think today is going to have to be a one-foot-forward kind of day. Every journey begins with a single step.

*Obviously it’s no longer the first day of summer for us, but life has been so busy this is the first chance I’ve gotten to get this post out. Obviously, we survived. It rained more, but we got to swim and we adjusted one day at a time. Rachel still asks for the bus, but it isn’t frantic. She just wants to communicate she misses it and wants it to start again. And it must be difficult for her. Not knowing when and if school will start again, not understanding how the big world works.

One day at a time, sweet Rachel. We’ll get through it together.

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Our life as a puzzle: uncovering the beauty of my daughter with autism.

by Jennifer Dyer

Our life is a puzzle. Sometimes I look at a situation like Rachel’s autism or my experience with cancer and the pieces seem scrambled in a hopeless, senseless jumble.

I have a choice in those situations: hide from it and pretend I don’t see it, which helps nothing, or I can pick apart the pieces and make sense from the chaos, step by step.

I want to quit, but something drags me forward. One piece at a time, patterns emerge and hope shows its face. I can’t help Rachel speak like a Shakespearean actor in one day, but I can work on her imitating “ee,” or “ah.” I can’t teach her to read in one day, but we can sing the alphabet. One thing at a time, one little step at a time.

As I look back over the years and all our struggles, I see each tiny puzzle piece we’ve already clicked into place. It’s overwhelming to see the whole, but when I look at it as tiny parts, I can manage.

And as we go along, something beautiful is emerging. Some of the beauty is in myself. I have grown in ways I never thought imaginable. I’ve learned how to persevere. I’ve learned how to love deeper than I thought possible. I’ve learned to forgive, to have grace in failure, and to laugh at the messes that used to send me into a panic.

But the real beauty that is emerging is Rachel. She teaches us how to be strong. She overcomes a speech disorder by using pictures to show us her desires. She attempts to make words even though forming each new syllable is like running a marathon for her. She struggles with deep anxiety and OCD behaviors, but she is willing to forge ahead with each new day. She is beautiful, she is strong, she is amazing. She is my beautiful puzzle that is a masterpiece.


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Broken snow globes, autism and other blessings.

by Jennifer Dyer

A few days ago, my parents came home from a trip bearing gifts for the grandkids. As we walked into Grandma’s room with the loot spread on a bed, Rachel knew which ones were for her. Rachel clutched a Dora ornament to her chest, a grin on her face. She even said, “Dohduh,” her way of saying Dora. 

My mom wasn’t finished, though. She pulled out a lovely red box and handed Rachel the bubble-wrapped treasure inside.

Rachel squealed when she saw the snow globe, filled with shiny glitter swirling around a polar bear. Rachel shook it and cooed while the glitter moved and sparkled.

She was so happy, in fact, I could’t bear to take the toys away from her to put them in the car. Besides, what could happen? Why not let her carry her treasure? We headed back to the car, Rachel bouncing along the grass.

But…as she opened the van door, it clipped the snow globe, which smashed to the concrete driveway. Rachel snatched it up and dove into the car. She didn’t want me to see, didn’t want anyone to know something had happened to her new toy.

My heart cracked and bled along with that leaky snow globe, right there on my parents’ driveway. What kind of mom was I, letting her carry it outside? Was I stupid? And now I had to do something worse and take it away because the driveway had spots of sparkly water on it, so that meant the rest would leak in the car.

I inspected it, convinced I could superglue it back together. But some messes are beyond repair. Rachel watched as I handed to globe back to Grandma. Mumbling, Rachel hid behind a towel in the back of the car.

I wanted to scream. It wasn’t fair! Seriously?! She got to enjoy her present for 10 seconds and then it was gone! Isn’t that a perfect metaphor for her life sometimes? Situations that look shiny and sparkly for other people often turn out cracked and full of leaks for us. So many things challenge my sweet Rachel: communicating, dressing, eating, running…

But I took a deep breath and looked at Rachel in the backseat. Me freaking out would only add to her stress. She would think she had done something wrong. I smiled. “It’s okay. Don’t worry about it.”

I know Rachel remembers that snow globe, but she can’t talk about it except to point to it in pictures. But the amazing thing is she’s not still upset about it. And that’s how she is about so many things in life. Even when I want to crawl under the bed and hide from the world, she keeps going. It’s like no one told her she has reason to think life isn’t fair. She doesn’t whine and complain and compare herself to others.

She lives, loves and laughs.

Sometimes I think I am here to help Rachel. But most of the time I figure it’s the other way around.

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Perspective in the storms.

by Jennifer Dyer

My heart is heavy this morning.

I’ve spent a lot of time being Diva Goldilocks with a side heaping of Little Red Chicken in the last week. Everything in my house was not Just Right, and I deluded myself that I was having to do everything myself. Anger planted poisonous roots into my soul as I wallowed in thoughts about everything in my life that wasn’t Just Right.

Stress and anxiety pulled at me as Rachel’s newfound OCD behaviors went into high gear. I think she deals with her anxiety by trying to keep her environment Just Right, at least in her eyes, which this week included Chex cereal all over the carpet. The more stressed I get, the more she reacts with increased OCD and sleeplessness, which increases the cycle in all of us.

But last night a dear, sweet friend of mine lost her home and cars in a tornado. I don’t know many details, but the pictures of her neighborhood on the news show only rubble. I know her family made it, but I wonder if they had pets. And if they were able to save anything. Pictures? Clothes? Special blankies? Some people died in the tornado, too. Did she know them? Did I know them?

I just heard another family in our family ministry lost their precious father and two daughters. Other family members are hospitalized. Devastating. Heart rending.

So much loss. So much heaviness of heart.

I feel like such a spoiled brat. My heart squeezes my throat shut every time I think of her situation. My eyes burn with tears. This woman spends most of her spare time praying for others and working behind the scenes to make some big ministries stay afloat. I love spending time with her because her presence is like a drink of cold water in a desert. The other family I did not know, but they are in the throws of devastation. Another family in our ministry lost their home, too.

Now they all need prayer and help. I’m sure many hearts are melting with grief this morning as we see in daylight the devastation of a storm which none of us could control.

And I have put Diva Goldilocks and Little Red Chicken back in perspective. My home is far, far from perfect, but it’s still standing. Instead of focusing on myself and what isn’t Just Right in my life, I should focus on being thankful for what I have and on being mindful of others and their needs.

Pray for Arkansas. Pray for my sweet praying friend. Pray for the other families so deep in loss. There are many relief funds set up. If you wish to give, here is one of the places taking donations. Mosaic Church of Central Arkansas Tornado Relief Fund.

If you know of any other relief funds, leave them in the comments or FB feeds.

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Autism, a special occasion, and one step at a time.

by Jennifer Dyer

It’s that time of year again–The Special Needs prom. Each year some amazing women from our church, along with many other generous people, put on a wonderful evening of fun and food for the special needs community in our area.

This year’s theme was TX, and the decorating team outdid themselves.

As this is a long-standing event in our community, I wanted our family to be a part.

Frosting taste tester.

Friday and Saturday, Rachel and I worked on baking cupcakes. Although she thought it was her birthday again, she still had fun.


I also took Rachel with me to the decorating “party” on Friday night. I knew I wouldn’t get much done–we managed to hang ONE star on the wall–but I knew it would be so ahead of time. My goal wasn’t to be hugely productive. My goal was to show Rachel what it means to be a part of something in several stages.

Did that bother me? Yes. I love this event and want to contribute my share to the scores of hardworking volunteers. Plus, it felt odd to be there and not be “helping,” but I want Rachel to learn how to be a part of something bigger than she is. To do that, I have to take things one step at a time.


After we did our big huge star hanging job, Rachel retreated to a dark stairwell, which meant I had to stand there and keep an eye on her. My heart sank as the others climbed on ladders, ferried giant TX flags and worked themselves into a frenzy to transform a drab gym into a Texas wonderland.

But then something wonderful happened. A young man said hello to me. He held the ladder for one of my friends and handed her pieces of tape with undying patience. He held out his hand, told me his name, and said, “I have autism.” He went on to tell me he’d been helping his mom with the prom for ten years and made sure he did a very good job decorating because it’s a very important event.

He then said hello to Rachel. She waved at him–actually at the wall to the right of him–but he tried to make conversation with her too, explaining that he also had autism.

It. Was. Beautiful.

I think that conversation was most of the reason I was there that night. To see what an amazing young man he has become. To see what kind of hope there is for Rachel in the future. To see what one step at a time can do for a person.

Someday that might be Rachel. Someday we might hang two decorations, then four, then ten, then be able to help make them. Someday she might hold a ladder and introduce herself to a young person with autism and give their mother a big ray of hope.

The young man’s mom also talked to me and introduced me to his brother, which I think should be another blog. They had lots of great advice…

Anyway, the prom itself was beautiful. Rachel danced some and sat some. I think her favorite part was drinking the lemonade. We saw several people from our Special Olympics sports groups, but Rachel was quite confused to see them at her party. And I found out my 8-year-old nephew is a dancing machine. Wish I’d gotten a video.

Seeing the families and friends at the dance touched my heart. Friends and moms danced with wheelchairs. Young adults danced and laughed without worrying who watched them. No one fretted in the corner and no one worried about being left out. There is something pure and beautiful about being in a room with people who love you for who you are, not for what you are wearing or any of the other reasons we judge people.
Thanks to my sweet friends who give so many months of their lives to this event. You know who you are. And you are special to us!

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I need a fork–solving communication problems in autism.

by Jennifer Dyer

The other day at Special Olympics practice I saw a friend who substitutes in Rachel’s class. After catching up, she told me about the last time she subbed.

She said something like, “Rachel kept asking me for something at lunch. She showed me her hand moving from her food to her mouth. I couldn’t figure out what she wanted. Was it chips? Her lunch meat? Poor girl. It took at least five minutes for me to figure out she needed a fork.”

My heart clenched. Rachel has barely learned to use a fork in the last few months. Before, handling utensils was too overwhelming for her. I try to remember to include her fork in her lunch, but I forget. And here she was trying to do what was right, but having trouble because she can’t communicate clearly.

For Rachel, I think communicating is like trying to drink a waterfall. Overwhelming. There is so much involved. Her mind can’t get it all going at once. Autism is like a veil over her mind, making the world more confusing. Add onto that apraxia of speech, which can be like having a blender mix up the sounds you want to say before it can get to your mouth. The process of putting sounds into words is daunting.

About six years ago, I velcroed (is that even a word?) little word pictures and symbols all over the house. Grandpa even bought us an expensive software program to build the pictures. I put them in the fridge where I put the lemonade so she could hand me the picture to ask for a drink. I put them on the grapes. On the TV. On the…you get the picture (har har).

Picture Problems.

But all they served was to give Rachel something to pile up and flap in her hands. It was too early. The pictures were such a disaster I gave up. We eventually used them again in a notebook when she was about six, but her therapist wanted us to move away from the pictures when Rachel started using more signs.

But signs are difficult. Sometimes people don’t understand. Rachel has trouble making her signs clear, too.

A multi-faceted approach:

So I think, at least for Rachel, a combination of communication systems has helped. Some people said it would confuse her, but Rachel uses all sorts of methods to communicate: she points, gestures, signs, shows me pictures, types in symbols on her ProLoQuo app on her iPad. She also uses some word approximations.

The signs are good because it is more close to real time communication, and she always has her signs with her. Pictures are great because they are usually clear. (For instance, when she wanted me to find a toy, she brought me a picture of her room and pointed to the toy.) The picture symbols with words on them are good because I think it helps with reading. (In addition to being a mom, I’m a speech-language pathologist, for what it’s worth.)

Some people also said I had to choose a communication system and stick with it, but I disagree with that too. We use different ways to communicate, so why can’t Rachel? Several of her speech-paths have agreed with me. Some haven’t. It probably all depends on our experiences.

I know my child. You know your child. If you think having different systems is overwhelming, keep it simple. But if you think she can handle it, different methods, I think, will help the brain generalize communication. For instance, the more Rachel learns about letters and putting words together, the more she understands language. The more she sees printed words associated with pictures, the more she learns to read.

Concerned using sign language or picture symbols will inhibit speech? Don’t be. It actually helps to build a foundation and positive communication experiences.

Worried your child won’t speak? I was too. I even got into a pretty heated discussion with a speech-language pathologist a few years ago over this. She had been taught past age five the brain lost its ability to be plastic enough to learn a skill like speech.

Research is starting to show the opposite. I remember from our Relationship Development Intervention (RDI) training, that the brain does continue to learn. Other programs are having success with teaching children to speak after age five. As I said, each experience builds on the next, especially with language. The important thing is to find some way for your child to communicate and build on that. There are problems like muscle weakness or stiffness that can inhibit speech, but Rachel doesn’t have those issues.

And realize this is a long journey. It doesn’t change instantly.

The brain is like a city filled with roads. Each experience builds new thoroughfares, and makes the roads bigger. The more pathways you can build, the better off the brain will be. The more you use certain “roads,” the bigger they get.

So, for Rachel’s lunch and her fork problem, I used my phone and PicMonkey photo editor to make her another little word symbol. I put a plastic fork on a piece of white printer paper and took a pic. I uploaded it to PicMonkey and added the writing. I printed it on tag board and put clear contact paper over it. Then I put sticky velcro on the back.

Pretty simple, once you have the supplies. (These are the ones I have on hand. The brands don’t matter.)

And I velcroed it into her lunchbox.

It’s a clear way she can tell someone to get her a fork the next time I forget. The more I do this the better off she will be. It fosters independence and feelings of success.

If pictures and words are helpful to your child, the good news is you don’t need those expensive computer programs any longer. I mentioned PicMonkey photo editor. I use the free version and my phone or symbols included in my Microsoft word program to make what I need. It’s fast and easy. And free!

Will Rachel ever talk? I don’t know. She’s trying. And I believe the brain is plastic and can learn. So, I have hope. Will it be easy? No. But the more she learns to read, the better she understands the structure of language. It’s a long road. Sometimes I feel like the bear who went over the mountain and sees…another mountain to climb. But I still have my hiking boots and a granola bar somewhere in the bottom of my purse. There is hope. It is dim at times and sometimes I lose sight of it, but it’s there.

For more examples of how I’ve used word pictures and symbols, see:

Preposition lessons with Rachel.

As the bus turns. (simple social stories)


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